Month: August, 2013

This morning I went for my six-month exam. Other than fatigue from having survived a swift move, I have been feeling well. In late February/early March. the daily, serious pains associated with radiation cystitis abruptly stopped. In June I determined that the other side-effects of cystitis–distress and incontinence–were well behind me. I stopped taking the Oxybutynin that had been prescribed for me. My bladder and bowel seem to have healed from the effects of chemotherapy and radiation.

I have had several “clean” pelvic exams and tests for cancer cells. My last scan was June of 2012. It showed no signs of cancer. In October it will be twenty-four months since my hysterectomy. In December it will be twenty-four months since treatment ended. I was thinking there would be a scan and blood tests, but there were no tests today.

My oncology team wants me to undergo surgery to correct a pre-hysterectomy hernia. The surgeon who originally diagnosed my cancer was going to repair it as part of my hysterectomy, but he ended up having someone else perform the surgery. That doctor did not touch the hernia. But it was in the way of his reaching my lymph nodes. As a result, no lymph nodes were tested–which explains why my chemotherapy and radiation treatments were “adjuvant.” They addressed risks unknown. I learned that the scans also can be confounded by the hernia, and that my radiation was more extensive because of the state of my “habilis.”

Everything looks good right now, but, if cancer were to return, everyone would feel better if things got “tidied up.” There’s no question but that I would like to get this addressed as well–EXCEPT–I do not have health insurance, I do not have the money to pay for this surgery, I am about to start school and cannot imagine undergoing surgery during “school time,” and the very thought of checking in to the hospital after my December 2011 experience there is out of the question unless it would save my life.

I am returning this week to teaching at the law school that terminated me the day of my hysterectomy. The law school is facing declining enrollments and has decided to cut the compensation paid to adjuncts, like myself, by 40%. At the same time, it has increased class size by 25%. The school has conducted its own internal investigation of my case and has cleared everyone involved of any breaches of university policies.

I suppose that means that the school would support my termination a second time if I underwent surgery–even if my surgeon said, “You can return to work next week.” That’s what the surgeon said last time.

The EEOC is examining my case now. I would like to wait for the results of that investigation before chancing fate on the subject of job security. As if an adjunct has any job security.

The Affordable Care Act will go into effect this fall. I would like to wait to see whether I can afford insurance when the new exchanges open in my state. I might have new options for treatment at a hospital that does not scare me.

The doctors think the charity that covered so much of my post-surgical care would agree to pay for this surgery if I appealed to it. That will take some time.

The doctors want me to go now for a mammogram. My cancer was estrogen-related. Some breast cancers are estrogen-related. So, I’ll do that. My maternal aunt died after more than a decade of dealing with breast cancer, so I will have the test.

My weight had dropped somewhat. My blood pressure was much better. I’m only taking a water pill for that. The doctors put off until my next check-up an ultrasound of my legs that might rule out varicose veins as the reason for my sometimes swollen right leg. No one else reacted when I mentioned the possibility of lymphoedema–which means nothing. I know that it could be the reason for my swelling from reading the excellent blog http://lymphnodetransplant.wordpress.com/. Check it out if you have unexplained swelling after surgery or other treatment that might have affected your lymph nodes’ ability to function.

I am seeing a GP in late September. I see the P.A. for another gynecological check-up in October. I can investigate my insurance/charity/surgical options between now and my next oncology appointment in February 2014.

I am feeling relieved to have gotten through this check-up, but my definition of “relief” has changed from “phew” to a sort of uneasy reduction of the alarm level from orange to yellow.

Photocredit: ripsaw-defence.co.uk

A lot can happen in six months. And I have some checking to do before checking in again with my oncology team.

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I’ve been getting the occasional pedicure since chemotherapy ended. The Taxol worked my finger and toenails over pretty badly, and I lost the sense of relaxation I once had in tending to my own nails. My nails had all of these strange bubbles that looked like fizzy, orange soda percolated up from the nail bed. There were white and yellow cloudy marks. My nails peeled. And my skin was bone dry. I read about how a pedicure could expose me to infection and read a number of reviews of places before choosing one. The place I chose for my first pedicure was clean and the owner was a breast cancer survivor. It was a very positive experience.

At some point since 2012 the salon was sold. All new chairs and tables were installed. There now appear to be three or four family members working there. A mother and her daughter have handled my pedicures on most occasions. Both are very gentle. I chose to have only clear polish applied so that I could monitor the appearance of my nails. This summer–about 18 months after chemotherapy ended–I appear to have no more cloudiness or marks on my nails. But they are weaker than they once were, prone to peeling unless I keep them polished. I do plenty of polishing between pedicures and apply tea tree oil to my bare nails before polishing them to diminish the possibility of infection.

This week I had my pedicure handled by a male attendant. According to reviews on yelp.com, this is the owner’s son-in-law. I wasn’t sure how I felt about having a male provide this service. It is a personal service. No one else touches my feet. I grew up in a family in which hugging is strange. We sometimes have gone long periods of time between visits without hugging when reunited. It’s not quite a head nod greeting we exchange, but it’s close. I actually had to think awhile about overcoming my aversion to casual contact to have the first pedicure. But I like to think I’m “equal opportunity” when it comes to workplace matters so I made no objection.

The experience was not the same as it has been in the past, and I have since asked several friends who have a long history of having manicures and pedicures and they have not had a male attendant so I don’t yet have a complete handle on what troubled me. Maybe you can help.

The attendant was polite and spoke excellent English when he greeted me and asked me what services I wanted, but he did not use English again until I was ready to leave and he suggested I wait a little longer for my nails to dry. During the pedicure process, he used hand gestures and spoke in another language to the other two attendants in the shop. The air conditioning was not on and it was 85+ degrees outside. After my feet had been sitting in some warm water awhile, I started sweating. Everyone else in the shop (the three attendants on duty) enjoyed a good laugh after a lively exchange in another language right before the salon owner turned on the air.

Why do people do that? I don’t care whether or not they found my discomfiture amusing as much as I care that they spoke so that I would not understand them. There’s more courtesy in talking in the storeroom than there is in doing this in front of me. I was reminded of an episode of Seinfeld in which Elaine realizes the Korean nail attendants are using the same word to discuss her as to discuss a customer’s dog “princess.” She takes George’s father to translate and opens a new can of worms.

I understand that I may be overly concerned about the possibility that I have been discussed in my presence:

The narcissists or paranoid customers might think that nail technicians are talking about them when they speak to each other in other languages across the room, but they aren’t. Apparently they don’t care to share with each other how lovely your nail beds are or how gross your big toe is. “In general, they mostly gossip about their family and friends and the shows they watched last night,” says [celebrity manicurist Jin Soo] Choi.

This attendant did not display the pampering that is part of getting a manicure. He barely had me soak my feet before he got to work. The hot soak in bubbling water is one of the best parts of the experience. He used a rotary tool to file my nails. I found myself wondering how clean it could be when, following his use of it on me, he just plugged it into the wall to recharge and did not place the rotary head into the steamer for cleaning. He did a good job handling my cuticles, but he had me keep both feet on the footrest the whole time. I am accustomed to more soaking between some of the stages of work being done. This helps with exfoliating. He didn’t do much exfoliating. My feet were in pretty good shape to start. It was only a month since my last appointment, and I don’t wear open shoes, which means my skin is not that dry now that chemotherapy is further and further behind me.

The foot massage was minimal. Have you seen the commercial for a spray-on lotion in which the woman in the commercial sprays a stripe of lotion onto her legs and steps into her clothes and runs? That’s only a little less attention than I received. All the time, he’s using these hand motions to communicate. Usually the word “manhandle” implies unnecessary roughness. Here, I use “man-handled” to convey a lack of attention to detail by a particular man.

I came home, stripped the polish and covered my nails in tea tree oil. Then I soaked my feet in a combination of Listerine and vinegar (thanks to a tip from pinterest.com) and used a pumice stone to finish exfoliating my feet.

I hoped the pedicure would counteract some of the punishment my body has taken during the month of packing, moving, and unpacking, but I ended up feeling like I had subjected myself to new suffering. My knees were painful from thirty minutes of sitting with them flat out while he conducted his checklist of activities.

I don’t think this service needs to be performed by a woman, but I don’t think I’ll be giving that shop my business again. I tend to be pretty direct with people when I am unhappy. But I did not speak up during the process. I just kept thinking this was wrecking my effort to pamper myself. I’m not sure why I did not say more. I only know that I grinned and bore it and then skedaddled home to fix things.

Nails are a $6 billion business, according to totalbeauty.com. Manicures were one of the few things I did to pamper myself. Now I have to go check out new places. Bummer. But the suspicion that the rotary tool might not be properly cleaned is reason enough to choose another place. I found this online:

Podiatrist Dr. Robert Spalding, author of “Death by Pedicure,” states that “at this time, an estimated one million unsuspecting clients walk out of their chosen salon with infections — bacterial, viral and fungal.” And no matter which salon you go to, there is always a risk of infection. He claims that in his research “75 percent of salons in the United States are not following their own state protocols for disinfections,” which includes not mixing their disinfectant solutions properly on a daily basis, not soaking their instruments appropriately, and using counterfeit products to reduce costs (for example Windex substituted for Barbicide), says the doctor. And the problem is that there is no way to really “verify an instrument has been properly soaked and sterilized,” without watching the process.

I don’t mind having men cut my hair. I’ve had that experience several times in my life. I worked several times with a male trainer at a gym. He was fine. My opthamologist is a man. He crowds right up against me to study what’s going on inside my eyes and behind them, but it is impersonal. I have had many male doctors. But this guy rubbed my feet the wrong way. Is it me? Or have you had a pedicure that killed your buzz?

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It’s been more than two weeks, and unpacking has a long way to go. I am so physically weary of the process that I now unpack for a day or two and then need a day off. The largest room in the house is my office. I have made headway there. Books fill the bookshelves. A file cabinet is filled with supplies that are in some order. My desk is assembled and has space for me to work. Most of the furniture that will remain in this room is in place. My kitchen table will now become a conference table. I have not yet attached two of its legs so that I can set it in place. A mover handed me some washers and screws during the move. I put them in a “safe” place, but that box has not yet appeared from the rubble that is my storage room. That room still looks like the government storage room at the end of the movie Indiana Jones Raiders of the Lost Ark where the Ark of the Covenant gets filed away.

My bedroom is 90% unpacked. It needs a little organizing. When the movers were unloading they filled my closet with things that should have gone into the store-room closet. I need to move them to make room for what is waiting to go into that closet. Then I can finish that room. Of course, the storage room is filled all the way to the door. The work must wait.

The bathroom is small, so I unpacked it first. It looks pretty good.

The kitchen, living room and storage room are overrun with boxes and shelving units. The movers brought in the boxes first and the shelving units at the end, so I have to move boxes out of the way before I set the shelving units in place and then can store the boxes on shelves.

Sifting through the haphazard collection of a 56-year-old woman’s life in boxes marked no more specifically than Kitchen, Bathroom, Bedroom, Office, and Stuff has convinced me that much of this must now go.

I had no time to weed through stuff before the move. But this time capsule in which I now live feels like a confused jukebox. One minute I am opening a box in which I relive high school. I keep hearing Seals and Crofts singing Summer Breeze and We May Never Pass this Way (Again). I find journals from college in the next box. The soundtrack from those years is very disconcerting and revolves around guys I was dating. Don’t Go Breaking My Heart by Elton John, Weekend in New England by Barry Manilow, and C’est la Vie by Emerson, Lake and Palmer, do battle with countless disco songs. I still have the LPs, cassettes, and CDs. In the next box there are wedding photos from the marriage I hope will finally be annulled this year–today would be my 32nd anniversary. I hear Dan Fogelberg singing Longer, a song sung at our wedding, but our song was Babe by Styx, and he did leave me, so it is the song that lingers longest in my memory as I encounter items I received at the time we wed.

I collect. I have a number of blue and white porcelain items: lamps, vases, pots, figurines, and boxes. I have pink and green Depression glass. I have children’s books, mostly written when my mom was a child. I have thousands of books on various subjects. Long ago I imagined these would be interests I would pass down, but I never had a child who would be saddled with my proclivity for assembling collections.

I suppose I should do my family a favor and get rid of them. After all, I might only live as long as my dad did (59). I may sell them off now. But this is the “wealth” I accumulated in my life and it is difficult to “spend” it when I could live as long as my great grandmother did (99). What I do know is that it takes too much energy now to pack, move, unpack, or even experience all of this again.

I don’t need another thing, except a couch or maybe a chair or two. See how easy it is to keep accumulating. Barb and I were in the store buying moving supplies a couple of weeks ago. She saw me looking at a display and started scolding me not to even look at anything!

Kevin, my former naturopath, once told me that the reason why I collected and could not part with so many things was that I am a Pisces with a south node in Taurus. The Taurus south node was tied to things that provide comfort. It also made me stubborn so that I would not part with them. I don’t know if I believe it is that simple. I think, however, that I might have enough containers to open my own Container store. Maybe life would improve without at least some of them.

(Image of Taurus)
It does not help that I am physically affected by cancer treatments in ways that linger. My knees have had it. The joints were never a problem before my 2011 diagnosis with cancer. I think it was the chemotherapy that rendered all of them “tricky.” At the end of the day I lie on my back in bed and listen to little clicking sounds every time I adjust my position. The neuropathy in my hands has become more than annoying after weeks of packing and unpacking. I am very conscious of the fact that I have an uncorrected hernia. My mom keeps telling me, “Enjoy this moment. It’s going to get worse!” She’s probably right.

I’ll tell you what part of me feels younger than ever though. My mind. As I have pondered thousands of reminders of days gone by I could not help but think of what is just around the bend for me. Today it is raining. I sit at my desk that faces a busy street. Cars rush by, their tires making that shushing sound that draws me down an unexplored road. If I got in my car with no itinerary, where would I drive? My current home is mere blocks from Lake Michigan. Today I would drive north along the lakeshore until I could drive no farther. There is nothing that makes me feel happily tied to my world like a shoreline. Perhaps that is my water sign directing me.

There are trees in front of my window. As the rain strikes the leaves and then bounces down to the ground below, my eyes are drawn up to the sky. It is gray with clouds, but a plane passes just to the north, and I think about travel. Where would I be today if free to fly away? I think I would choose to sit in some huge cathedral in Europe to contemplate lives spent on the construction of a single building that could not be completed in one person’s professional lifetime but would still draw in people many, many years after its architect’s death. Imagine using your life to leave such a monument. This must be that Taurus south node at work again.

In the back of the building there are workmen finishing a new deck that makes me think of parties. If I could have the party of my dreams, who would be on that guest list? Ah, that I will keep to myself, except to say that I might need the help of a higher power to assemble everyone whose company I would enjoy even for an hour.

If I disentangle myself from some or all of what now holds me down, will I catch the upsurge of a breeze and fly away? Who can say?

It almost is enough to make me forget that I see Dr. H on Monday for my six-month check-up. Bummer.

What have you hung onto that ought to now wind its way somewhere else so that you can feel free for new adventures as well?

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Laura has stage 4 ovarian cancer and has exhausted her former employer’s disability benefits. She has been surviving on food stamps and the fumes from a prior, more financially productive life. But she’s at the point where she and her rescued pets share the same meals. She is recovering from her cancer treatments slowly. And she has had to ask friends for help to hang on.
You may have read some of the blog posts that circulated last week after someone questioned another cancer patient’s statements about how our community of patients and caregivers were lazy and only interested in handouts. If so, you know that is not true. This disease is a scourge. It robs you of your strength. It depletes you financially. It is wonderful when your insurance, state aid, or charitable assistance help you hang on. But everyone isn’t lucky enough to get such help, sometimes the help isn’t enough, and sometimes it doesn’t arrive in time.
I am re-blogging this posting from Laura in case you are in a position to help. As it indicates, Laura is appreciative of prayers as well as financial support. If it is in your power to pray, then say a prayer for better days in her future. And thank you for reading her story and recognizing that this blithe spirit deserves our support as she deals with cancer and all the suffering it brings.

I’m sorry to say that the past couple of treatments have left me worse than ever BUT…I’m still standing. I’m still here and I’m still fighting.

I am going to go on vacation. Really. I’m going to my brothers house and I’m going to shake this feeling off and I’m going to have fun. See my nieces and nephew.

Try to start to live again. I signed up for a program called go fund me to help me pay my bills. I have lost quite a lot of flexibility financially. What a funny way to put it. I’m SO broke and now, me and the dogs and the cat all eat the same thing. Rice, hamburger and carrots all cooked until edible. Very tasty. I can’t buy dog food…

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Many things have changed in the last few weeks. I am doing my best to stay focused on what matters and not let myself feel overwhelmed. Some days it has been harder than others.

I had plans for my summer. I have not managed to act on them. I planned a trip to DC to visit my sister and her family. My mom and I were going to head east together and stay ten days. I had to cancel the trip. Mom did not go without me. I was going to reunite in DC with John, an old college friend I had not seen since 1978 or 1979. I have many friends in DC, some of whom were amazing sources of support during cancer treatment, like Mary, Roberta, and Paul. It will have to be some other time.

I was going to start a new independent contractor position handling executive searches of partners and practice groups for large law firms. I spent many hours learning all about the firms and trends. I could not start the searching because of the big task that ate my summer. All that research must sit another week or so. By that time summer will be over. Fall classes start in about nine days.

I planned to clean house. Life has become tougher since cancer. I could see that I needed to house clean, not just with broom and mop but by tossing things. I did get that house clean, but now am in a new, smaller apartment that costs me more money, and it is a mess. I’m not sure when I’ll get back to what used to feel like a mess. I’m taking life one box at a time and dealing with whatever I find there.

I planned to rest. I am very tired. The last semester of school was particularly tiring. I taught some part of twelve different classes in the months from January to July. I wanted to take a few naps. I wanted to sit in the shade somewhere and read a novel. I wanted to continue juicing and work on a few good habits.

Instead, I MOVED. It has left me exhausted. The new apartment is on the first floor of a two-flat. The landlords live upstairs. Things did not go as planned. The new landlords ripped off the decking behind the house as soon as I signed a lease (news to me as the subject did not come up until after I gave them a security deposit agreed to sign a year’s lease). The deck did not get finished until Thursday of this week. During my move I could not use my off-street parking space. I paid for street parking and got a $50 ticket one day for coming out five minutes too late to feed the meter. This home has more front steps than the last one did. I feel each one as I climb and climb dragging stuff I no longer care about into a new place I don’t like.

It was not cleaned well before my lease started. It was supposed to be, but was not. So there already has been conflict to resolve. It took five days to get that resolved.

My friend Barb helped with the packing, but there was no time to weed out the unnecessary from the necessary. In the final days of the move I shed plenty of stuff but some of it I wanted. I have so much junk that just got carried along. It feels like I will still be unpacking until my next move.

I hired movers and a cleaning service to get me out of the old apartment. (There went the money saved for health insurance under the Affordable Care Act.) By Tuesday, when I was sitting on an empty can in my old apartment watching Irena clean the old place I had no physical strength left. I could not manage to make one more trip to my car. I just left when the place was clean. As Barb said, “It will have to be enough. Let it go.”

I slept on my mom’s couch all last week. She had my brother’s dog Shamus for the week. It was not restful, but it was better than sleeping in my bed in its new, tiny space. I still have not managed to make that bed and had to discard both my couches because they would not fit in the new place. There was no place to rest in my new place.

My hands tingle all day long. My joints are so painful I dug out my seven remaining, unexpired pain pills, originally taken after surgery, to go to sleep at night. I have had two showers all week. I am too sore to climb into the tub at my mom’s house. I’m not sure how she does it, the sides are so high.

The movers dumped things in my house, sometimes (often) ignoring my color coding of boxes. I already have a pre-surgery hernia that the surgeon did not fix. I have to be careful dragging things around. I have one room that is corner-to-corner filled with boxes. If I need anything in that room I must kiss it goodbye for a long time.

Other stuff has been happening at the same time. In the last days before the move I heard my ex-husband’s application for an annulment from the church was moving forward. The application was welcome. The timing is not so convenient.

I gave up my home phone after AT&T wanted to change it for an 18-block move. Why is that necessary? They could move it to a cell phone–giving me two AT&T cell phones that never get more than two “bars” any place I want to make a call. Why can’t they assign the number to a different landline? Now I have one phone that rarely gets a line. I get messages hours after the calls and have to get in the car and drive to get them.

I kept working, part-time, but it kept me busy. I finished three classes. I held an information session for people wanting to become paralegals. I attended a meeting at which I was trained in responding to an armed shooter in a school setting. That was eye-opening. I gave a presentation on using social media to network for a job. It was well-received, which means that I am still getting requests for help from people two weeks later. I will finish another 12-week class tomorrow. I got out an issue of the biweekly newsletter that I write and edit. I learned that both of my fall classes that start in the next 30 days will have new textbooks. What were the chances?

I keep going with a new mantra–Cancer did not kill me. This move is not going to kill me if cancer couldn’t. I am not happy about many of the recent changes in my life, but I am tough and resilient and hopeful that things will work out if I keep working at it. I am tougher inside even if weaker on the outside. I have seen my worst fears draw close and know that most of the rest of this stuff is just stuff. I will handle it in time.

I remain not down or out–but changed. Wish me luck with the unpacking.

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I am so sad at the thought that Mike’s time with us is winding down. I cannot recall the last time I was so sad, but I pray for him to have it his way–whatever that means. And I’m asking you, even if you do not pray, to send out positive thoughts to a kind person doing his best to lend others a hand in what is for most of us is the toughest challenge in life–dying.